14 min read

The Chronicle of my MS diagnosis

Lucie MRI with big MS lesion 2002

It was 2002. I went on a three-day snowboarding trip, and when I came back home, my life was never the same again. It’s never easy to tell this story, even though I know it so well, because it’s the moment of my life where I see a before and after. Before my diagnosis and after my diagnosis. Everything stops there and my life starts over basically.

So, let’s take the things a bit from the beginning. – Watch the video or read below…

My life before my diagnosis and the first strange MS symptoms

Six months before the really big symptoms that defined that something was really off with my body, I was working at the time. I was a hairdresser, 22 years old. Always super active, moving around, moving fast, doing a lot of things. I was carrying things, I was running and helping. And at the same time with a smile, trying to be my best self and doing my job in the best possible way.

And then what happened was that for some reason during those months before the big crash, I didn’t have patience. I realized that everything irritated me. My colleagues were talking to me and I was not friendly. My endurance had dropped and I started to need to sit a bit more often. I was getting much easier tired.

Also, here is that paranormal of this chronic condition that only much later I realized that these were the first symptoms:

At the time I had a scooter and I would go to work driving my scooter. And because the last months before the big crash it was already cold and the wind was on me, what happened is that half of my body, but really exactly half of my body, I wouldn’t feel the cold at all. I would even feel warm. So the breeze was heating on my body. Half the body was freezing because it was cold and the other half was actually feeling almost like burning. So, I was on the scooter thinking, «That’s funny, what is happening here?… Well, actually that’s very convenient because it’s winter and I’m only half cold!!!”.

And this difference with the temperature also appeared when I would go down in the lower part, bending, when I would clean up hair after, you know, cutting hair or when my colleagues were cutting hair and I was cleaning up the hair. When I would bend, I would feel again, this strange sensation, a strong heat, which was so strange again.

And this is where I started to think, «What is this? Probably nothing».

So, I continued my work. And then at the same time, I was going out, I would be clubbing, a young human full of life, wanting to go out. And I was going out at the time. I was also smoking. And I remember a specific day that I was with a friend in a club and we were at the bar and we were sitting there. I was having a beer and I was smoking. And what happened is that I was talking to my friend and I was about to actually grab another cigarette and when I was trying to touch it, imagine this is a cigarette, I was trying to touch it, but I could not touch it. It’s as if you see your fingers do the move, but I couldn’t grab it and I thought, «What is happening? What is it? Did I drink too much?» But I knew I didn’t drink too much. «So what is happening here?» It’s like moments like you don’t know what is this.

Anyway, this was another symptom that appeared. It was with my right hand, I thought, okay, that’s fine. I will try with the left hand. And indeed I tried and I managed to grab it. So the left hand was totally fine and I thought, «okay, then I will smoke using my left hand, no problem.» At these moments, you see something strange happening, but you cannot perceive or realize what could this be. It makes no sense. This is completely absurd. How is it possible that out of nowhere I cannot grab something as light as a cigarette? (Which, by the way, PLEASE, don’t smoke – side story.)

So I was trying to touch it and I could not. Then I would bend and I would feel the strange sensation of temperature. I would ride my scooter again, and the wind on my left side would feel like very, very hot.

That’s it.

In the meantime, I had become so irritablethat I couldn’t stand work anymore.

So you can see that the first symptoms were not only physical symptoms, but it also had to do with my inner world. So it was already a combination of things. But at that moment, I still had absolutely no clue what was going on.

The trip that changed my life

Two months later, I had planned to go with my then first serious relationship to snowboard in a very nice place in Greece. By the way, Greece has also amazing mountains to ski and snowboard – just in case anybody’s interested! The place we went to was 9 hours of bus travel of my home in Athens. So, we went to this beautiful mountain called Kaimaktsalan. It was like a dream come true. We stayed in this beautiful little village. Everything was amazing. I enjoyed really so much. I had the time of my life. I was still learning to snowboard, but I didn’t care. You know, I would go, I would fall. I would get up and then again, I would fall. It was a whole, you know, sensation of every aspect. It was learning, it was falling, it was great. So there was a lot of falling down. And this part is important because I had a lot of physical pain. On top of that, please, forgive me if it’s too much information, but for me, it’s important to share this with you, I also had my period on those days. This means that everything was a little bit more challenging and difficult for the body, but I still had a lot of endurance.

Later when I took the bus back home – so imagine 9 hours ride home – I was sitting in different positions and when I finally arrived home, I was in a very bad state. I had pain everywhere. Even my hair hurts. But I knew why it was that. Because of all the falling. Because of all of this challenge of the physical activity, all of this, I had so much power.

And then when I arrived home, I completely collapsed. So, I spent a lot of time to being laid down in bed or on the sofa and instead of feeling a bit better every day because, you know, when you fall down, you have pain and you’re like, okay, I will rest. I will take some painkillers maybe, it will get better. But instead of getting better, every day I was getting worse.

The pivotal moment

About ten days after this trip, I couldn’t stand up to go to the bathroom. This was the pivotal moment. This was not a joke anymore. Something was seriously off. I couldn’t get up. I needed the help of my parents, my mom or whoever was next to me to help me go to the bathroom and then come back and lay down and say, «What is this? What is this? What is happening?»

And I’m pretty sure that this «What is happening» so many people are experiencing it when something like that shows up in their life.

Seeking for answers

When we realized that I was not getting better, then it was a moment to start to go to doctors and see what is happening…

Neurologist No 1 and further symptoms

We went to a very first doctor in a private hospital in Athens, and as I was walking towards his office, the doctor was looking at me, so he could see me walk already. And when I came to him, he examined me and did some little tests, which then much later I knew these tests, these classic neurological tests. But at the time it was just very uncomfortable because I had zero strength, and every time he would touch my body in different spots, it would feel very, very uncomfortable. I found out later that this doctor told my parents on that day that it’s a possible Multiple Sclerosis. But I still need to do different tests to find out.

Nobody told me at the time since it was not official. And in Greece, we have this tendency to hide the truth as much as we can for as long as we can. To hide it, to not tell the truth to people, to not tell the truth to the patients, probably to protect them.But you know, it’s good to know the facts and the truth.

Then I got hospitalized in that hospital right away. And I stayed there for about a week. In that time, I did an MRI and a spinal tap. The MRI, already showed some lesions. And after doing the spinal tap, actually, it took me over a month to not feel dizzy anymore (due to its side effects). So after spending one week at the hospital, they were giving me some cortisone pills that helped me to walk a little bit better. Because all of this time when I was walking, especially with my left foot, I couldn’t feel my foot. I would walk and the steps were as if I’m «walking on a cloud». As if I see my foot, I see the floor, but I cannot really predict where my foot is going. It’s like an illusion. And this illusion keeps going. You are looking, but you have no control over what you are looking at. I didn’t have pain. It was just that my foot, mostly my left, but also my right felt numb. It was as if I had no sensation of it. The only thing is that, as I said before, I had the left side of my body that didn’t feel the same way as the right side. This is fully happening from the top of my body until my entire left leg. And this is still the case that the left side from the right side never ever felt the same again. So always this left side feels a bit numb.

So, I was taking this cortisone pills and my walking was a little bit better. Then I was sent home with a blessing. It was very blurry. There was no diagnosis yet. I mean, they would call it «Demyelination» without really knowing what to do after that. So, it was like: let’s see…

Neurologist No 2 – a shocking hospital experience

In the meantime, my family had found another hospital that was specializing in neurological conditions in Athens. I stayed there for three weeks. I need to describe just for the sake of the story, how was this place. So this hospital was half for neurological conditions and half psychiatric unit. So we had a bit of all kinds. We were split somehow. But still, let’s say, where I was in the neurological sector my room had me and eight or nine more ladies with all bunch of neurological conditions. So I was 22 years old, suddenly in this room, looking left, looking right, a bunch of beds in a row. And everybody seemed completely different. Everyone seemed to go through something completely irrelevant. I even remember it was one lady on one side that was completely covered with a sheet, and I thought she had passed away. So, I would walk to go to my bed and I was looking on the other side and I was so scared, thinking, «what is happening here?» But on the other hand, I had to stay because I had to find answers. I had to understand what was happening and how will I get back to normal.

So I stayed there for three very, very long weeks. What happened there? Nothing much. They kept giving me the cortisone pills as prescribed from the previous doctor. And I would walk every day. The doctor would check. «How was your walking? Okay.» They would write it down. «All right. Okay.» And then the main questions. «Okay, let’s see. What is your temperature? Okay. Did you use the toilet today?»  «No». «okay. No.» Write: No. You know, so it was this every day for three weeks. This is all that happened, basically. I did more MRI’s which showed that the lesions I had, especially one from this little size of a… I don’t know, a rice, It had become a very big NUT. It was really, really much, much bigger and this was very scary because at first you see, this is so small, you know, in the MRI. And then suddenly a big thing like that and thinking, “What is this?»

A personal devastating family story

After those three weeks, I went home again and the same day that I went home, something also very, very difficult for our family happened. My beloved aunt passed away, she was 39 years old. This also made me even worse. And this plays a big role. In the meantime, all of these last couple of years, I had to cope with this, with my beloved aunt that was very ill with cancer and with brain tumor on her head. So this probably was also the reason why the M.S. showed up, when it showed up.

Neurologist No 3 – Finally a diagnosis

A couple of months later, my mom found a doctor in France that is specialized in different things like that. I still didn’t have a diagnosis, by the way. They keep saying, «it’s Demyelination». Years ago, I had no idea what that meant. No one really knew about this stuff. So, I went to France with my mom, to another hospital, to another doctor with my MRI’s and with all the results I had with me. And there the French doctor said «it’s Multiple Sclerosis» and you need to start a treatment right now. From the very first clear indication that something was off in February until my first official diagnosis in France, this was about five months later. So all these five months, I had no idea what was happening to me. I was getting a little bit better because I still had these cortisone pills, but I never got better fully. I was never like before. This is for sure. At that stage I could walk a little bit better. I had zero endurance. I couldn’t go up any stair at all. No more stairs. And often I needed support to hold something, to sit, to get up. So I needed much more support to do regular things that in the past I didn’t have any issue.

What has been my hardest challenge

The hardest thing from the beginning up to even today is this unknown. The unknown  not only of the future, of how is this going to develop, but also the unknown of the day. There is no way to predict how I’m going to feel today, later today, or even tomorrow. There is zero possibility to know how my body is going to be or my mind is going to be, or even emotionally how I’m going to be. So this is exhausting and is the biggest challenge that I had and have every single day. Some days I have so much energy that I can walk, I can run, I can go up the stairs, I can do whatever I want. I can move the whole flat, I can pack, I can do everything. And then there are the other days that I cannot do anything. I cannot even get up to do the basics. I cannot shower because showering means standing. In this flat we have a shower, so I need to be able to have some energy to shower. And even after showering, I need to predict what is it that I need to do? Will I have energy for the after the shower? So you see, this is the difficulty to not know how you are and also that you need to predict everything.

Predict? Okay, «What is it that I want to do today?» Today I want to make this video, write this blog. All right. «What do I need to do in order to make sure I have some energy?”= do nothing else before and rest, rest and rest and rest. So whatever I want to do, whatever I have to do, I need to predict it, to plan it.

What I wish others to know about MS

I wish them to know that every MS patient presents differently. As every human is unique, in the same way every MS patient is unique. My symptoms are just my symptoms. It doesn’t mean other people have the exact same symptoms. They might have similar symptoms and more symptoms completely different than me. For instance, a symptom that is very, very usual that I don’t have, it has to do with the vision. Some people really struggle to not see well and to have different impairments to their vision. I do not have this so far, but it’s something that I hear a lot from others around me. So this is the important thing. If you hear someone says, I have a MS, first of all, for some people, it’s easier, for others is harder. But no matter what, it comes with a luggage and the big luggage already is the shock. The shock of this diagnosis. The shock of the unknown. The shock of not knowing what is going to happen tomorrow. Will there be a cure? Will there be a better medication? Will my body deal well with this medication?

What is my biggest learning after living with MS for 22 years

My biggest learning is that we can endure a lot more than we think. So many times, I have heard people tell me, «How do you do it? You are coping with it so well» and all of these things. But I can assure you that many, many times when something happens to us, it’s much easier to cope with it than we think. We often think we are going to lose our mind. Our life is going to be over from any difficulty or any permanent change. But the truth is that we can endure a lot. And physically and mentally and emotionally.

And the second learning is that we can impact a lot what is happening to us. I will make another blog and video on how I manage to control different symptoms and how I manage to eliminate them or to deal with them in a better way or in a different way. So, our body has a lot of power. We can change things. It’s not just: this is my diagnosis, these are my symptoms. Full stop. Not at all. We have a lot of power and a lot of possibilities to impact our symptoms and to change them. It’s a journey that is long and it has a lot of milestones and moving towards getting worse, but also moving back towards getting better. I am better than I was. Of course, this depends on some phases. Some phases, I’m better than others. But in general, my overall physical state is much better than it was 22 years ago.

I want you to be hopeful and to never give up. To keep working. I will make many blogs and videos also for physical activity. I will share with you a lot of things that have supported me and also other people with MS that I am supporting as well.

We never give up. We all know that MS patients, are MS warriors, right? We never give up. We always find ways to feel better. And if we cannot feel better to be patient. To be patient, that tomorrow it’s going to be better. We should never lose this hope.

If you have questions, please don’t hesitate to write to me contact@mslifecoach.com and I will answer you.

Thank you so much for reading and all the best.

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